Joshua N.

California

Birth Date -  June 9/2010

Main Diagnosis -  Spina Bifida

THEME:   "Lil' Monsters and Friends"

Joshua's Story

Joshua was diagnosed with Spina Bifida when I was 20 weeks pregnant. We were told to terminate the pregnancy but knew that we would love this child more than anything. He was born on June 9, 2010 and had surgery the next day to close the large opening on his back. The third day in the hospital we were told he had a blood clot in his frontal lobe and severe hydrocephalus. We were able to take him home from the NICU after two weeks.

At 3 weeks old, Joshua had his second surgery to insert a shunt for his hydrocephalus. At 3 months old he had his third surgery to remove a tumor from his skull. Since then he has had a total of 10 surgeries; several on his intestines, countless ER trips and hospital stays for kidney infection. He has also been diagnosed with neurogenic bowel and bladder which means he is completely incontinent and we have to use enemas and catheters to control his bowel and bladder to prevent obstructions and damage to his kidneys.

Joshie has been going to physical therapy and occupational therapy twice per week since he was three months old and speech since he was 2 years old. He is partially paralyzed from waist down but was able to use a walker until recently when he began to develop pain and weakness in his legs and feet. He just recently underwent spinal surgery on May 1, 2014 to de-tether his spinal cord, and we are in the process of getting him a wheelchair for full time use as he can no longer bear his weight on his legs.

Through all of this he has continued to smile. Nurses, doctors and all who meet him are inspired by his contagious smile. He has such a warm heart and good spirit and I am so proud to call him my son!